Despite Our Losses, People with ME/CFS Want MoreWe've been cheated by ME/CFS and we all know it. That's a no-brainer, if you'll pardon the cognitive pun. And loss didn't just result from the bad things that befell us. It also encompasses the good things that just ... never came. The absence of bounty. Of wholeness. Of peace.
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MRC's relationship with funding biomedical research into ME/CFS.

I'm trying to find out whether the MRC has ever funded biomedical research into ME/CFS. I've had a look, but could see no posting.

Currently the MRC has put ME/CFS as a priority research area, with Stephen Holgate as chair of the MRC CFS/ME Expert Group. Recently Annette Brooke MP, led an adjournment debate in the house of commons, where she ask the Health Minister Gillian Merron about this very issue.

The MRC is one of the main public funders of medical research, receiving its funding through grant-in-aid from the Department for Business, Innovation and Skills. The MRC remains committed to supporting scientific research into all aspects of ME, including evaluations of treatments and studies of the biological basis of the condition.

In 2008-09, the MRC spent 728,000 supporting four separate projects in this particular area. Nevertheless, we recognise there is scope for an expanded research programme for ME. The MRC has set up an expert group, chaired by Professor Stephen Holgate, to consider how best to encourage new research into ME, and how to bring researchers from associated areas into the field. The expert group arranged a small research workshop on ME at the end of last year, and the results will be published on the MRC website in due course. We also need to address the fact that not enough proposals for research are coming forward for consideration.

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Although the Minister indicates that funding has been given for this particular area, she fails to mention which area she means. ME/CFS or biomedical research into ME/CFS?

Dr A Wearden. University of Manchester.
Randomised controlled trial of nurse led self-help treatment for primary care patients with chronic fatigue syndrome

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The only study I can see which may involve biomedical research is the one at Queen Mary College, University of London. General and specific risk markers & preventive factors for chronic fatigue and irritable bowel syndromes. After digging a little, I found the following:

General and specific risk markers and preventive factors for chronic fatigue and irritable bowel syndromes in a birth cohort. (Barts and the London, led by Charlotte Clark). This study has only just started so no results are yet available. The investigators will examine risks and preventative factors for CFS and irritable bowel syndrome in man thousands of people born in one week in the UK in 1958.

They are also strongly involved in local, national and international research networks and national (eg MRC Biomedical follow up of the 1958 Birth Cohort, being the coordinating centre of the multi-centre MRC funded PACE Trial for CFS).

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Does anyone have further information on this study? Is it in any way a biomedical research study?

I'm going to assume for now that it won't be, and end with the following.

I am aware that the APPG on ME will be taking a closer look at the MRC, but for now government Health minister are willing to, at best mislead a member of parliament, at worst lie to them. It will be interesting to see what the new Government does with question of this nature in the future. I think I will try to get my local MP to find out, get them to ask a direct question, what biomedical research has the MRC funded into ME/CFS?

Its clear to what direction the MRC is going. I believe that Prof P White sits on a MRC CFS advisory Board. Also Prof Rona Moss-Morris Via The Royal Society of Medicine Webcast.
Stating not to go to the MRC asking for more Biomedical funding, but only allow funding for BioPsychosocial research . You can find it at 25.10 Min's as per link provided.

In May 2003, the Medical Research Council (MRC) announced its “research strategy for CFS/ME”, widely welcomed as the first formal research strategy for the illness. It listed a number of strategic themes of particular importance (case definition, epidemiology, pathophysiology, interventions, health service research, research capacity and the value of lay participation). Subsequent initiatives by the MRC included the issue of a notice highlighting CFS/ME as a current strategic priority (2003), a CFS/ME workshop (2003), and a “Joint Action for ME” workshop (2006).

So, what research has since been funded? Well, at least five separate studies (see below) costing at least 3,180,900 have been supported. From the bald titles, it is impossible to determine what each involves, but it seems that three fall far short of being definitive (one is for “indirect support”, one is for a “CFS-like illness”, and one is simply a feasibility study, albeit an expensive one), while the remaining two are randomised clinical trials (RCTs) of psychosocial strategies.

From details published in the National Research Register (before it ceased publication in October 2007), we know that the largest (PACE) trial is a four-arm RCT comparing cognitive-behavioural therapy (CBT), graded exercise therapy (GET), adaptive pacing and “usual medical care” alone. As its blurb explained, “"CBT will be based on the illness model of fear avoidance… GET… on the illness model of deconditioning and exercise avoidance"”.

The FINE trial, by contrast, offers severely affected patients supportive listening, GP “treatment as usual”, or a nurse-led self-help approach which includes elements of CBT and GET delivered in the patient’s home (four 90-minute sessions, with six 30-minute phone conversations over 18 weeks), with a qualitative interview to explore “patient views on illness causation, beliefs about chronic fatigue… and previous experience of treatment and doctor–patient relationships”.

In total, approximately 91% of the total grant-spend on ME/CFS in five years has gone on trials of non-specific management and coping strategies. It is important to point out, however, that neither of these trials is actually worthless; in an ideal world in which 100 million had been invested over five years in ME/CFS research, a 3% spend on assessing the usefulness of various coping strategies, such as CBT, relaxation or meditation, might have been acceptable. The point at issue is that most of the MRC’s inadequate grant-spend has gone on this aspect at the expense of truly biomedical research, the reverse of the situation in other illnesses such as multiple sclerosis or rheumatoid arthritis. Even the dogs in the street would think this record dismal.

There was discussion about this subject before here, but I can't think of an obvious way to search for it. If you search theyworkforyou.com there's a section to table parliamentary questions and if you search for "myalgic" for example you see these questions. They are asked repeatedly and always the answer fudges and misleads by dodging the issue of what is psychological. It really needs the question asking in a more definitive way, and pursuing properly. It's a critical point because arguably the departments answering that question are misleading the house.

Tomk answered this question once, probably in about Jan or Feb, basically there have been occasional tiny bits of money from other budgets in support of some biomedical researchers - eg Kerr - but essentially it's pretty much fair to say there has been no publicly funded biomedical research in the UK or US since 1987 or so (and probably a lot earlier).

I hope you manage to get to the bottom of it and find a definitive list - and even get that acknowledged in the commons - because it's a crucial component in the campaigning case. When you list 4 or 5 key messages, one of them has to be something about the complete lack of any biomedical research, so that fact needs nailing rigorously and comprehensively. But unfortunately it's tricky to come up with the definition that forces a distinction between 'biomedical' and 'psychological' funding and comes out with a nice simple sound-bite and a number. It's a crucial task though: good luck!

My pleasure, if I can be at all helpful to anyone it makes my day - sadly this has not progressed in terms of making beds/washing up or cooking!

On a serious note, one can only really 'escape' from the UK's assumption of CFS being a biopsychosocial disorder by never refering to the word 'CFS' at all,
or the more hybrid version of the Department of Health's CFS/ME.

I note on the NHS choices section about 'CFS' they never actually dispute ME does not cause brain/spinal inflammation - which I thought was interesting? Interesting because if the MRC are to ever refer to 'CFS' or 'CFS/ME' as ME - then they are not supporting a public health information website read by millions.

''Chronic fatigue syndrome (CFS) is the term often used and preferred by doctors. This is because in most cases the main symptom is chronic fatigue. Also, with CFS there is little evidence that inflammation of the brain and spinal cord occurs, as it does with ME. ME is thought to be too specific to cover all the symptoms.''

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Also note, that the wording does not dispute ME causes brain/spinal inflammation.

''CFS is also known as ME, which stands for myalgic encephalomyelitis. Myalgia means muscle pain and encephalomyelitis means inflammation of the brain and spinal cord.''

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This means that NHS Choices is not in agreement with the MRC, a most puzzling situation for person's interested in the neurological disease ME (ICD-10 G93.3) and the biospychosocial disorder of 'CFS/ME' that is coined by the UK Department of Health as two illnesses being contained within one forward slash.

Due to the difference in the NHS describing what ME and CFS are that is at odds with the MRC's belief both are the same - the MRC are thus obliged to confirm to the general public:

A) ME (Myalgic Encephalomyelitis) does not cause inflammation of the brain & spinal cord (which would be at odds with the NHS)
B) ME is not a neurological disease affecting the central nervous system (which would be at odds with the World Health Organisation and ICD coding of Benign Myalgic Encephalomyeltis)
C) CBT/Graded Exercise is a robust method of treating neuro inflammation in ME.
D) Refusing to fund research into neuro inflammation in ME is beneficial to patients.
E) Refusing to fund all other bio-medical research into ME is also beneficial to patients.
F) Placing files on ME (Myalgic Encephalomyeltis) under the official secrets act until the year 2071 is beneficial to patients and aids research into ME.

Agree, CFS is a bad word to use in the UK, I tend to use ME. However, because of the use of CFS in the USA and elsewhere, I sometimes say ME/CFS as opposed to CFS/ME. To be honest I'm starting to wonder if I should use ME/CFIDS when discussing the world wide situation, and ME for the UK. You know what I mean, I'm sure. Either way, when I contact my MP it will be ME.

The NHS direct website is definitely of interest, thanks again. The points you raise do highlight the mess they have made of this.

How do you feel about the proposal for Scotland? Canadian criteria for ME, NICE guidelines for CFS? (CFS in the UK really being plain old chronic fatigue - and just in case anyone thinks I'm being offensive, I have that diagnosis as it's all they use)